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Introduction
How
to tell if you need help
When
the going gets tough, the tough look after themselves
Treatments
Final
thoughts
If you have ME, there’s a good chance that you’ll develop a psychological problem at some stage during the illness. This is understandable, given that patients not only have to cope with a number of extremely unpleasant symptoms, but also with a variety of ‘man-made’ stressors, (such as ignorance, misinformation, disbelief, a paucity of experts working for the NHS, and a benefits system which doesn’t recognise ME as a legitimate source of disability1). Other medically ill populations have an easier time. For instance, if you develop breast cancer in the UK, you not only have access to various specialists, but also to breast care nurses, psychologists, plus additional information and support from organisations such as Bacup. In other words, there are plenty of people who are able and willing to give you helpful advice to deal with your symptoms and any emotional distress. These individuals do not usually trivialise the illness, nor is the condition dismissed in the press as a minor ailment resulting from misguided beliefs picked up from ‘hotlines’ or pressure groups. In short, most women with breast cancer can focus all their energy on dealing with the illness. Most people with ME can’t.
First of all, it’s worth pointing out that not everyone who feels low or anxious, realises it. Some of the symptoms are obvious, e.g. feeling tearful and worthless, self-hate, irritability, not being able to enjoy oneself anymore, not being interested in others, discouragement about the future, feeling jittery etc., but others are more ambiguous and may be attributed to the ME, e.g. loss of appetite, sleep disturbances, difficulties concentrating and panic attacks. To get a reasonable idea, I think that patients should ignore physical and ME-related symptoms for diagnostic purposes, and focus instead on their moods and feelings. Thus sadness, worthlessness and tension are better indications of a mood disorder than loss of appetite or an inability to concentrate.
Aside from symptoms, it’s worth looking at one’s behaviour. You may have a psychological problem if you’re avoiding even minor activities because you’re afraid of triggering a massive relapse (with ME, you should be able to pace yourself, besides which, no one should be making important decisions based solely on fear). I’m also aware that some people avoid activities and spend long periods in bed because everything seems pointless, hopeless and out of their control. (Patients with uncomplicated ME want to get out of bed and feel terribly frustrated if they’re in a severe relapse and they can’t. Except in the acute stage or during a relapse, they are constantly testing their limits and tend to do too much rather than too little).
A final tip is to check the timing of the symptoms. In ME, symptoms are usually linked to exertion, and people rarely feel tired all the time or exhausted from the minute they get up. Early morning tiredness may be a result of insomnia due to ME, but it could equally signify a separate/additional condition, e.g. primary sleep disorder or clinical depression. Do consider the possibility, since many of these ‘complications’ can and should be treated.
In a nutshell, many cases of depression and anxiety which develop following the onset of ME (and CFS) are a reaction to the illness and/or related to the disease process. However, when you’re deciding on the best way of managing them, it’s a little like of falling into a ditch. You may know exactly how and why you got there, and it may not even be your fault (it was dark, you lost your balance, someone else pushed you), but you can’t get out simply by doing things in reverse. There are two guidelines which are relevant here. Firstly, once you’re down there, it will take you longer to crawl out if there’s no rope and no one to push you up. Secondly, the longer you’re in that ditch, the greater the risk of additional problems, like hypothermia and malnutrition. In short, the wise person checks the depth of the ditch and looks for aids (see later).
So how do you check the depth of the ditch? A reasonable rule of thumb is that the more severe the symptoms, the greater the influence of biochemical changes (e.g. levels of serotonin in the brain) In such cases, you’re dealing with a medical problem and it should be treated as such. (Don’t think ‘mind over matter’ but ‘mind and matter’).
Before I get accused of medicalizing unhappiness and frustration, let me summarise what one can do if the distress isn’t too upsetting, if it doesn’t dominate your existence and you can still find things to enjoy and to live for. In this case, you’re probably in a shallow ditch and you don’t necessarily require outside help. Do what you normally do when you‘re upset or stressed and try supplements like St. John’s Wort (e.g. Kira). However, if these don’t work quickly, or you’re increasingly tearful or on edge, you’re losing your appetite and your sleep is getting worse, then don’t struggle on your own, There are people who are willing and able to help you cope, if you’ll let them.
My recommendation for mild/moderate cases of depression and anxiety would be to start off with a course of supportive counselling, provided by a qualified practitioner who is experienced in dealing with physical disabilities2. How can counsellors (or psychologists) help people with ME? Even if you know exactly why you fell into a ditch, they can teach you to recognise warning signs and show you alternative paths so you can avoid falling down them in future. They can also support you while you’re down there and help push you up.
If you have mild/moderate depression, think also about a three months trial of St. John’s Wort, supplemented perhaps with antioxidants (e.g. vitamins A, C, E, selenium etc.), Reduce the level of sugar and saturated fat in your diet, increase your intake of fruit, vegetables and foods rich in magnesium, and see if that helps.
If the depression is more severe and you’ve pretty much lost all control over the symptoms, then don’t waste time with counselling or supplements: go straight to your GP. Clinical depression is not the same as low mood or feeling a little down. As I noted above, this is a medical problem and most cases are best treated, at least initially, with anti-depressant drugs (metaphorically speaking, this is the most effective rope). I admit that not everyone needs drugs. However, it’s extremely difficult to manage an average bout of clinical depression on your own. My advice is therefore that you should take depression seriously and seek the help that’s there. (If you had a broken leg, how long would you hop about without crutches?)
Aside from medication, you may also be offered psychotherapy or counselling. Here are a few notes for those seeing a psychiatrist for the first time. First of all, the literature has indicated that a high percentage of people with post-viral syndromes are sensitive to antidepressants, which is why most specialists will start these patients off on a low dose and increase the amount as tolerated. Secondly, experience has shown that some antidepressants are more useful than others in ME and CFS, e.g. low dose Prozac has an effect on the immune system, and I’ve also heard good reports about Lustral and Prothiaden. Incidentally, antidepressants may also improve sleep disorders and in some cases, pain.
If your main problem is mild anxiety, you can try to self-medicate for a while, e.g. using camomile tea, meditation and reducing coffee and tea. I’m not a fan of valerian, but kava kava may help. Again, if these don’t work or the symptoms are disabling, seek help sooner rather than later.
As for CBT, independent experts recommend this for patients whose fatigue is due to depression, stress or irrational/unhelpful beliefs about exercise. It will also benefit patients who feel hopeless and out of control. However, there’s virtually no evidence that it’s effective, alongside graded exercise and antidepressants, when people have uncomplicated ME. There’s also no evidence that it’s better in the long term than supportive counselling.
Laypeople who’ve been helped by CBT, and who don’t understand my lack of enthusiasm, often remind me that it’s also used for patients with AIDS and MS. However, that’s missing an important point. Those groups are not getting CBT instead of drugs, surgery, or support. CBT is an option, an adjunct, for those who require it. How many British psychiatrists also offer their ME and CFS patients dietary advice, how many will try vitamin B12 etc., how many test for thyroid and adrenal function? Not enough. At the moment, it tends to be CBT plus graded exercise or nothing, Personally, I’d like to see more broad-based programmes, focusing on providing support and teaching coping skills, with a course of CBT for those who require it, not as the basis of treatment3.
The message of this article is that patients with ME should look after themselves, physically and emotionally. If your psychological problems are fairly mild, try counselling. If they’re more severe, ask for psychiatric help. Forget any misplaced macho thing about pulling yourself together. That’s based on ignorance and prejudice. The fact is that psychological symptoms can be just as distressing as physical ones and there’s plenty of help around. So why suffer?
Another point I’d like to make is that you shouldn’t feel guilty if you can’t seem to cope. Few people with serious illnesses get through it without needing a bit of support. Of course, there’s always someone in the vicinity who thinks that counselling is for wimps and who’ll tell you how they survived two wars, cancer, a stroke and several bouts of the bubonic plague without the need for a psychologist or psychiatrist. Well, here’s what I think about that!
Firstly, a wise person knows when they need extra help and isn’t too bothered what ignorant people think. Secondly, I don’t trust people who claim they didn’t need someone to lean on when times were hard. In my experience, these individuals are not always as robust as they pretend (a chat with the children is often very revealing!) They may not have seen a counsellor but perhaps they relied on alcohol, illegal drugs and tranquillisers (on the quiet, of course). In some cases, they might have taken their distress out on someone else. Admittedly, there are people who cope surprisingly well with all manner of dreadful diseases, without psychotropic drugs or a Counsellor. The point I’m trying to make is that such people are a minority. Most of us, particularly those with chronic, disabling disorders, cope better with a little extra help,
A final point is that people who dismiss counselling out of hand are often far from sympathetic human beings. Why listen to them? Listen to kind, knowledgeable people who’ve been there and done that. Pick and choose your experts wisely.
To sum up: most people with ME will benefit from talking to a sympathetic pair of ears at some stage during their illness. So, please don’t reject psychiatry because of the myths. When the going gets tough, seek out someone who knows about ME and who wants to help. You may be amazed at the difference it makes!
Ellen Goudsmit. PhD C. Psychol.
1. Johnson et al. (Health-related personality variables in chronic fatigue syndrome and multiple sclerosis. JCFS, 1999, 5, 3-4, 185-6).
2. Experience with disabled people is extremely important. If after two or three sessions, you don’t get on with your counsellor/psychologist, or you get the impression that they really don’t understand how you’re feeling, that person isn’t right for you and you’re probably better off finding someone else! As for qualifications, people should have trained for a year or two and begun their practice working under supervision. Ideally, they should belong to a professional organisation with a code of conduct. Ask your GP, local hospital or group if they know of a competent individual.
3. My ideas on treating uncomplicated ME are consistent with those of American experts e.g. Friedberg, JCFS, 1999, 5, 3-4, 149-159.
Copyright EM. Goudsmit, PhD C.
Psychol. 1999. ©
Editor ME and CFS Capita Selecta Quarterly
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